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What progress has been made with lipodystrophy?
Aug 13, 2012

What progress has been made with lipodystrophy, if any? Do newly diagnosed HIV positive people still get this deforming condition like so many of us long term survivors did?

Every so often I see someone with it out in the public arena. It has always seemed to me that it's more or less a taboo subject in gay newsmagazines,etc.? Is this because so much advertising revenue comes to them from the pharmaceutical companies so it would be like a publication shooting itself in the foot? Sorry I have so many questions on this topic; lypodystrophy nearly destroyed my life around 2000-2001 after 11 years w/ asymptomatic HIV.

Had I not had insurance, endured the discomfort and embarrassment as I kept working(in healthcare, ironically!) and gritted my teeth through at least 8 painful liposculpture or related procedures, I would not be where I am today: still working, still healthy,and strangest of all, still looking pretty damn good even at 61.

It took me 6 years to write a novel based in part on the hellish emotional crisis I went through with lipodystrophy and it was published (My Strange Little Oasis, JMS BooksLLC) I imagine this topic has been addressed in your forum, but if it hasn't, don't forget us early phase long term survivors who found out that survival can exact a terrible and unbelieveable challenge called "lipodystrophy." It was a nightmare; I was one of the lucky ones who got through the dark.

Response from Dr. Pierone

Hello, and thanks for posting.

It sounds like you went through an ordeal, but am glad to hear the outcome was a positive one.

The big difference for those newly diagnosed with HIV is that the medications are better now and less likely to produce lipoatrophy. AZT is still used, but mostly by clinicians who have not kept up with advancements. Zerit and Videx are almost never used anymore, so fewer people recently started on HIV medications are developing severe lipoatrophy.

However, the standard treatments Atripla or Truvada/Isentress may produce lipoatrophy, but it typically takes many more years to become noticeable. There is also research interest in "nuke-sparing regimens" to see if the risk of lipoatrophy may be further reduced by avoiding this class altogether.

Lipohypertrophy still occurs and the main risk for this body change appears to be exposure to protease inhibitors.

We still have a long way to go towards safer treatments. The ultimate goal of course is a cure.



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